Brain tumors are one of the deadliest forms of cancer, affecting nearly 700,000 people living in the United States alone. Nearly 80,000 new cases will be diagnosed this year, and a third of those will be malignant, according to the American Brain Tumor Association (ABTA).
And yet there is still so much we don’t know about this often-fatal disease. It affects men, women and children of all ages.
While the survival rate following a diagnosis varies across a number of factors – including age, genetic markers, type of tumor – it hasn’t improved much over the years.
Bellingham resident Marianne Brudwick has experienced first-hand the devastating effects of brain cancer; in 2005 she lost her best friend to the disease, and in 2009 her husband, Rod, was diagnosed with a brain tumor.
The time surrounding her husband’s diagnosis and subsequent surgery was a whirlwind for Brudwick. She not only provided emotional support and care for her husband during his post-op recovery, but she also had to continue caring for their three children and manage the everyday household tasks. And then there was the paperwork – learning to navigate the complex insurance and healthcare system along with the overwhelming mountain of paperwork that came with it was challenge all its own.
It is one thing to leave a physician's office with a diagnosis. It is quite another to learn how to live with that diagnosis, particularly when it is as severe as brain cancer.
“Everything is so urgent. As a caregiver, you are left exhausted,” Brudwick says. “You try to be the stable support person and do what you can. The rest is out of your control.”
Despite the surgery, Brudwick’s husband passed away in June 2010. She credits the End Brain Cancer Imitative, a support group based in Seattle, with helping her through the painful grieving process.
In 2011 Brudwick formed the Brain Tumor Support Group in Bellingham through the PeaceHealth St. Joseph Cancer Center as a resource for survivors, their families and those who lost a loved one to the disease.
Having experienced firsthand the roller coaster of emotions and sense of urgency surrounding everything, Brudwick realized there are other families out there going through this who need a place to go.
“This trickles out into all areas of life,” she says.
Everything is so urgent. As a caregiver, you are left exhausted. You try to be the stable support person and do what you can. The rest is out of your control.
The goal of the Brain Tumor Support Group, which meets on the first Friday of every month from 2-3 pm at the Cancer Center, is to be there for one another.
“We’ve become a family, a safe haven for people,” Brudwick says of the group. “Expressing yourself does a world of good.”
Attendees talk about how cancer impacts their lives, as well as share information with one another. The group provides practical advice for how to carry on during the diagnosis and treatment of brain cancer. Topics include navigating financial issues, pre-authorization forms and communication with doctors and staff, all of which Brudwick says can be daunting. The group also offers practical tips, such as how to organize a notebook, keep track of prescriptions and how to ask for help from friends and family.
The group hosts an annual walk to gain awareness for the deadly disease. The fourth annual Bellingham Brain Cancer Walk will be held May 21 at Civic Stadium. For information on registration and volunteering, visit bellinghambraincancerwalk.com. Proceeds will benefit the End Brain Cancer Initiative.
“It is one thing to leave a physician's office with a diagnosis,” Brudwick says. “It is quite another to learn how to live with that diagnosis, particularly when it is as severe as brain cancer.”
ADVICE UPON DIAGNOSIS
As someone who has experienced first-hand the devastating speed with which brain cancer can grow and spread, Marianne Brudwick recommends having tumor tissue tested right away. She also recommends getting a second opinion and seeking treatment at a facility that specializes in treating brain cancer.
For those who don’t know where to turn, Brudwick recommends filling out an inquiry form on EndBrainCancer.org. The group can help get you or your loved one matched with the appropriate doctors right away, as well as connect you with the support structure to help you navigate insurance, medicines, and paperwork, among other things.